Lorna Henry sat to the back of the room every time she went to her prenatal check-ups.
“I would look at the way the nurses were laughing and making jokes with the other patients,” the late Trinidad and Tobago HIV activist recalled in a 2013 interview. “I’d look to see their reactions when they opened my file. One doctor was really rough when examining me. Once he actually said that he doesn’t know why people with HIV come here (the maternity clinic)”.
For many people—among them those living with HIV, transgender people, sex workers and men who have sex with men—the otherwise simple act of getting medical care can be fraught. Will they have to contend with an unsettling look or a comment? Might they be denied service? Can they be assured their affairs will be treated confidentially?
The Pan Caribbean Partnership Against HIV/AIDS (PANCAP) is leading a regional initiative to provide stigma-free services in health facilities. With support from the Health Policy Project (HPP) and University of the West Indies (UWI), the approach measures stigma levels among medical and non-medical healthcare workers, supports the development of interventions and monitors progress.
The project was piloted in two Eastern Caribbean countries, Dominica and St. Kitts and Nevis. It has since been repeated in Antigua and Barbuda and Barbados. There are plans to roll it out in Haiti and the Dominican Republic—the two countries that about three-quarters of people living with HIV in the region call home.
Dr. Roger McLean of the University of the West Indies Health Economics Unit explained that with the new global emphasis on scaling up HIV testing and treatment, we have to examine whether “the supply side of the equation” works as it should.
“The assumption that the healthcare system is receptive to everyone is flawed,” McLean said. “The people who comprise the health service sector are coming from the general population and they have their biases.”
The survey looked at the attitudes of both medical and non-medical staff—receptionists, pharmacists, security guards, doctors, cleaners, nurses, orderlies and so on. One striking finding is that despite their scientific training, medical staff did not as a rule hold less discriminatory attitudes. Across the board, around one in seven respondents thought it was appropriate to sterilise a woman living with HIV, even if this was not her choice. One in three said people get infected with HIV because they engage in irresponsible behaviour.
One part of the survey focused on respondents’ observation of other staff members’ behaviour. At least one of every five healthcare workers reported observing a co-worker being unwilling to care for a patient living with HIV or providing poorer quality of care to those patients.
PANCAP Director, Dereck Springer, acknowledged the first generation of healthcare stigma reduction in the region which included medical practitioner training and a range of regional and national anti-stigma programmes and resources. But Springer explained that the new era of regional anti-stigma work is covering uncharted territory in terms of including key populations. (About one in ten respondents in the HPP/UWI surveys said they would prefer not to provide services to men who have sex with men and sex workers.)
St. Kitts and Nevis National AIDS Programme Coordinator, Gardenia Destang-Richards, agreed that the issues surrounding MSM and sex workers were particularly problematic for healthcare workers in her country. St. Kitts and Nevis went on to develop a stigma reduction training that included workers at all levels. The majority (89%) of the country’s health facility staff participated over a year long period.
Health staff collaborated on a code of conduct for all facilities following the stigma and discrimination reduction training. They were asked ‘what do you envision your ideal health facility to be like?’ The training will be repeated every year. Already a client survey has shown that more patients feel they are treated with respect and dignity by healthcare workers. Feedback boxes have been placed in health centres and hospitals with a view to recording client concerns. Meanwhile, the National Advisory Council on HIV/AIDS has been working to strengthen national policies and procedures surrounding confidentiality.
Roger McLean, University of the West Indies Health Economics Unit
“We have to approach this issue from the public health perspective and minimise judgment. In the Caribbean context, the more people you deny services the fewer people you have to work with in terms of the broader goal. If your key focus is public health delivery, denying services does not mean people go away, but rather that they surface again, demanding more of the system that is very stretched. You have the opportunity as a health worker to uphold a fundamental right while making things a little easier for the rest of the health system.”
Gardenia Destang-Richardson, St. Kitts and Nevis National AIDS Programme Coordinator
The other staff often thought training would go only to nurses and doctors. They had never been included before but everyone needs to contribute, from the cashier to the security guard. We learned that very often persons working on various levels take their cues from nurses and doctors—the way doctors look at patients, whether they are told to wear gloves and so on. Including them in training was a real eye opener.
Dereck Springer, Pan Caribbean Partnership Against HIV and AIDS Director
We spent more time addressing stigma and discrimination among HIV positive people. Now men who have sex with men (MSM) and sex workers are more open about who they are than they were previously. Not enough work was done with healthcare providers as it relates to stigma and discrimination across the board.